Should all our genetic information be made public in order to eradicate genetic diseases from this world?
Who owns your genetic data once it becomes publicly accessible? What is your responsibility to family members when you know more about genetic diseases than they do? Who decides what kind of genetic information is relevant to a person? And what does genetic privacy mean to you?
In this challenge with Robert Zwijnenberg (Professor in Art and Science Interactions) you will critically reflect upon the issue of genetic privacy. You will dive into the ethical questions that come up with the disclosure of genetic data in biobanks and through genetic tests. This course encourages you to think about the cultural, philosophical and political tensions present in the debate around genetic privacy. You are invited to identify and listen to the viewpoints and values provided by the different stakeholders that shape this debate: corporations, researchers, consumers and patients. Furthermore, you will go off the beaten track by exploring the issue from the unique perspective of art and culture. After a lot of thinking, supplementing, deleting and adjusting, you will be asked to share a recommendation on how to regulate practices of disclosing genetic information, while taking into consideration the concept of genetic privacy. Your advice could serve as an eye-opener for policy makers!
This online learning experience is a spin-off of The Mind of the Universe documentary series created by the Dutch broadcasting company VPRO and professor Robbert Dijkgraaf, Princeton University. A number of universities in the Netherlands have used the open source material of the documentary series as a starting point to create similar experiences.

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Start instantly and learn at your own schedule.

Flexible deadlines

Flexible deadlines

Reset deadlines in accordance to your schedule.

Beginner Level

Beginner Level

Hours to complete

Approx. 11 hours to complete

Suggested: 5 weeks of study, 2-3 hours/ week...

Available languages

English

Subtitles: English

100% online

100% online

Start instantly and learn at your own schedule.

Flexible deadlines

Flexible deadlines

Reset deadlines in accordance to your schedule.

Beginner Level

Beginner Level

Hours to complete

Approx. 11 hours to complete

Suggested: 5 weeks of study, 2-3 hours/ week...

Available languages

English

Subtitles: English

Syllabus - What you will learn from this course

Week

1

Hours to complete

3 hours to complete

What is on Your Mind?

In this module, we will introduce the subject of genetic privacy. In a time in which more and more genetic material and information is being stored in biobanks, research labs and private companies, the urgency to consider the concept of ‘genetic privacy’ becomes all the more pronounced. We will discuss different practices dedicated to the disclosure and application of genetic data, and we ask you to reflect on your initial stance towards these practices.

Open up Your Mind

This part of the course will stimulate you to reflect critically on the different types of practices that work with genetic data, among which the Personal Genome Project initiated by George Church. You will get familiar with the ethical questions that these practices could raise. Furthermore, you will be encouraged to think about what the concept of genetic privacy means to you personally. What actually is genetic privacy? And what are the borders of its definition? How can we define the border between individual autonomy and public interest? Where do you place this border yourself?

Connect your mind

This week we will enrich the ethical debate around genetic privacy by viewing the subject from the perspective of art and culture. We will see how artworks and cultural objects can foreground the ambiguities, emotions and (cultural) assumptions often neglected in mainstream debates around biotechnological developments. Moreover, we will explore the potential of art to allow new publics to arise in the discourse around genetic research. In this module, we would like to make you aware of how your own emotions and expectations might influence your stance on the subject. From there on, you can get to a more nuanced point of view towards the issue of genetic privacy.

Make up your mind

Different groups of people with sometimes opposing interests take part in the public debate around the disclosure and application of genetic data. For example, patients, consumers, researchers, corporations, or politicians. These groups, or stakeholders, bring forward diverse arguments to advocate their position. Their arguments are often formed by emotions, gut feelings and cultural values. In order to regulate the disclosure of genetic data, while taking into consideration the notion of genetic privacy, we have to identify the different stakeholders and their values present in this debate.

Finalization

We have come to the final phase of this course: the phase of finalization. Make sure to have completed your policy advice and to have published it on the discussion board. And for those who did the honours track, also share with us your infographic, video or other type of visual. Feel free to post some last, concluding, remarks or insights on this week's discussion board.

Instructors

About Universiteit Leiden

Leiden University is one of Europe's foremost research universities. This prominent position gives our graduates a leading edge in applying for academic posts and for functions outside academia.
Leiden University is the oldest university in the Netherlands. It was founded in February 1575, as a gift from William of Orange to the citizens of Leiden after they had withstood a long siege by the Spanish. Our motto is: Praesidium Libertatis — Bastion of Liberty....

Frequently Asked Questions

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When will I have access to the lectures and assignments?

Once you enroll for a Certificate, you’ll have access to all videos, quizzes, and programming assignments (if applicable). Peer review assignments can only be submitted and reviewed once your session has begun. If you choose to explore the course without purchasing, you may not be able to access certain assignments.

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What will I get if I purchase the Certificate?

When you purchase a Certificate you get access to all course materials, including graded assignments. Upon completing the course, your electronic Certificate will be added to your Accomplishments page - from there, you can print your Certificate or add it to your LinkedIn profile. If you only want to read and view the course content, you can audit the course for free.